About Us

The TBI-Repository and Data Portal Enabling Discovery (TBI-REPORTER), is a £10 million, multicentre, multi-collaborator project.
The initiative is led by the University of Cambridge and is jointly funded by:

the Medical Research Council (MRC)

the National Institute for Health and Care Research

the Ministry of Defence

Alzheimer’s Research UK

TBI-REPORTER will bring together leading experts from across the UK to enable research into Traumatic Brain Injury (TBI) in all injury severities (including concussion) and a broad spectrum of exposures, across the lifespan from children to older ages.

It will also support research in previously under studied populations, including:

prisoners

homeless people

victims of domestic violence

The Platform

A data hub to collate and curate TBI research data at scale

This will integrate with existing infrastructure, in partnership with Dementias Platform UK (DPUK), and Heath Data Research UK They will establish linkage with existing UK TBI datasets, including:

Trauma Audit and Research Network

Intensive Care National Audit and Research Network

UK Rehabilitation Outcomes Collaborative

Close collaboration with DPUK will allow seamless adoption of procedures and protocols allowing investigators, for the first time, streamlined access to large linked TBI datasets via their Trusted Research Environment (powered by SeRP), and to international partners through the International Initiative for TBI Research.

A national biomarker resource

This will draw on expertise from both TBI and dementia research to:

coordinate the collection and processing of human blood and other samples at scale, including those obtained via advanced techniques, such as dialysis fluid from brain pressure monitoring in critically injured patients with TBI (brain microdialysis)

coordinate and standardise brain imaging data collection and analysis (computed tomography, magnetic resonance and positron emission tomography)

standardise collation and archiving of postmortem and surgical tissue samples in specialist tissue banks
collate and bank digital data from physiological monitoring in the intensive care unit, data regarding road traffic collisions from the UK Road Accident In-Depth Studies (RAIDS) database, and kinematic and biomechanical information from sensors worn in impact sports such as rugby

An experimental medicine network of research-ready NHS specialist neuroscience hospitals

These will have explicit early ‘proof of concept’ study capabilities to support research into novel TBI diagnostic and treatment approaches.

These will initially comprise six pathfinder centres, but eventually expand to 12 to 16 hospital sites, selected by potential to study advanced brain imaging, biomarkers and TBI treatments.

The network will develop a prospective proof of principle cohort of people with TBI. It will gather extensive banked clinical and biological data to demonstrate the platform is capable of delivering challenging proof of concept studies which will develop and refine future TBI research.

A Patient and Public Involvement and Engagement Resource

This will ensure appropriate and timely input from individuals with lived experience of TBI into research plans and conduct.

Mission

Traumatic Brain Injury (TBI) is a major cause of death and disability in people under 40 in the UK. TBI can lead to long-term health issues such as dementia, epilepsy, mental health problems, and a shorter lifespan. In the UK alone, TBI care costs over £10 billion each year and globally it costs over $400 billion.

While we have gained some understanding of the underlying processes driving TBI related health outcomes, drug trials have often failed and progress in clinical care has been slow. However, over the years, each of the individual studies investigating TBI and its outcomes has gathered potentially very informative data that, to date, has not been widely available to researchers outside of the original studies.

This lack of coordinated use of data has slowed progress in treating and caring for people experiencing TBI.

To address this, the TBI REpository and data PORTal Enabling discoveRy (TBI-REPORTER) was created. This exciting initiative brings together existing TBI research data and samples gathered in past and ongoing research programs in the UK and makes it more accessible to scientists. TBI-REPORTER has also established a network of centres across the UK to support clinical trials of novel treatments. This will aid the development of new diagnostic techniques, therapeutic interventions, and personalized treatments for TBI.

"Over a million people in the UK are living with long-term symptoms of a traumatic brain injury, and evidence suggests that exposure to such an injury can increase dementia risk. At Alzheimer’s Research UK, we believe it is only by bringing people from different backgrounds together through collaborative approaches that we’ll begin to solve the major challenges in treatment and diagnosis of TBIs. The TBI-REPORTER programme will be fundamental in improving our understanding of how brain injury contributes to dementia risk so we can prevent dementia in the future."

Dr Susan Kohlhaas, Director of Research at Alzheimer’s Research UK

Platform coordination & collaboration

TBI-REPORTER represents a collaboration of leading institutions from across the UK, and will be coordinated by:

This UK-wide collaboration brings together over 50 investigators with field leading experience in: epidemiology and cohort management; informatics, record linkage and database interoperability; cognitive and behavioural testing; imaging; biomarker science; genetic risk factors and their analysis; neuropathology, neurosurgery, emergency medicine and neurology research; human physiology, vascular, metabolic and immunological studies; models of human disease; target validation; and experimental medicine.

It also includes close engagement with the public, patients, and their families through the UK Acquired Brain Injury Forum (UKABIF).